This is the Biography of me, Alexander Salsitz (I prefer Xander). I am a 13 year old boy who's life changed in January 2012 when I was diagnosed with MDS (Myelodysplastic Syndrome). I have had 3 bone marrow transplants since then, the most recent one in April 2013. This blog documents my journey, beginning with my diagnosis, treatment, and ongoing recovery.

Thursday, January 26, 2012

Information

January 26, 2012

Dear Family, Friends, Clients and Colleagues,

For the past twelve days we have been dealing with a developing
situation in our personal lives and over the past two days have spoken with
many of you about what is going on. Everyone has offered to help and wants to
know how to stay in the loop, so we have put together this letter to share information
and help answer questions.

Our eight-year-old son, Alexander, has been diagnosed with a
blood disorder called Myelodysplastic Syndrome (MDS). We are awaiting the results of further genetic
testing to determine the mechanisms of his bone marrow stem cells that are
dysfunctional, and should have those results next week.

MDS is very rare in children and is a disease where the bone
marrow does not work well, and the blood-forming stem cells in the bone marrow
fail to make enough healthy blood cells. The disease happens because the bone
marrow cells do not develop into mature blood cells. Instead, these blood cells
stay within the bone marrow in an immature state. The symptoms and the course
of MDS may vary greatly from person to person. If MDS is left untreated, it can
develop additionally into Leukemia, meaning the patient would have both
diseases.

The good news is that we seem to have caught the disease very
early; we are still awaiting the definitive IPSS score to determine the exact
stage of the disease. Statistically, the younger the patient, the higher the
survival rate from this disease. In addition, there is a cure for this disease.

The bad news is that curing this disease means that all of
Xander’s bone marrow must be eliminated and his immune system completely
suppressed in order to receive a Bone Marrow Transplant (BMT).

The first step to this cure is to find a genetically compatible
bone marrow transplant donor for Xander.

We are working with the outstanding doctors at the
University of Michigan Mott Children’s Hospital to find a match for
Xander. We
pray that our five-year-old daughter, Molly, is the match for him. She
has
undergone the genetic test and we will get the results next week. If she
is not
his match, then we will turn to the national database of bone marrow
donors and
will pray that we can find a match there. Many of you have asked how to
be a
donor; we are working out the details with the hospital on how to
proceed with
a bone marrow drive. General information about donating bone marrow can
be found on the National Marrow Donor Program website at http://marrow.org

As we struggle to work through our newly changed lives and
trying to plan for all that will be involved over the next series of months, we
are reaching out in all areas of our lives; to you, our family, friends,
clients, and colleagues, for support.

Already, in the first few days after the diagnosis, the
overwhelming support has truly increased our hopes and prayers for our family
to get through this with Xander being cured and back on the road to school. So
many of you have shared stories of your family’s struggles and successes with illnesses; this means so much to us, thank you.

Some things that we will need during this time are:

Gift cards for Arbor Farms, People’s Food Co-op,
Plum Market or Whole Foods (we have close family members in town that have
offered to do our shopping)

Gift cards to Zingerman’s so that we can feed
Xander chicken soup non-stop! It’s just a stone’s throw from the hospital and
he LOVES chicken soup.

Gently used clothing for Xander (size 8/9 or M/L)
and Molly (size 6/7 or S/M)

We have pulled Xander out of school to keep him healthy, so
that when we do identify a donor we can move quickly into the treatment. Some things that will aid us in making these
transitions go smoothly:

Wool yarn for knitting

Stockmar modeling beeswax

Card games

Chapter books of fantasy, fables, or graphic
novels (he is at a 5th grade reading level)

Songs (in mp3 format) that inspire you, so that
we can play them for Xander